Life with MS & EDS

April 3, 2009

More than a bit surprised

Filed under: Uncategorized — by mseds @ 8:24 pm
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I finally got the CD of my brain and spine MRI in the mail today.  They sent the radiology report, too.  I honestly didn’t expect it to say much, so I was more than a bit surprised (shocked, perhaps) that it has a lengthy paragraph about the “multifocal lesions” in my spinal cord, including:

Posterior cord at C3

Right posterolateral cord at C3

Righter posterolateral cord at C4

Right cord at C4-5

Bilateral cord at C5

Anterial cord at C6

Left posterolateral cord at C7

It goes on to say that there are many in the thoracic cord, too:

Left cord at T2

Left cord at T3

Right cord at T6

Central and left cord at T7

Posterior cord at T9-10

Central cord at T10-11

Left cord at T11

Anterior cord at T12-L1

The C3 and T7 lesions have mild cord expansion and mild enhancement.  It goes on to say something I completely don’t understand, “the vertebral column and intervertebral disks are notable for a minor segmentation anomaly at C5-6 with a rudimentary disc, resulting in a straightened alignment.”  Huh???

Some of the cord lesions showed mild enhancement, which they say is suggestive of recent active demyelination.

I don’t think the brain part shows anything different, but I really can’t tell from the way it’s written.  One thing it doesn’t say is how large any of these white matter spots are.  I’m curious if the spots in my brain are any larger than they were before, but I guess I’ll just have to add that to my rapidly growing list of questions for Dr. Specialist on April 15th.

Knowing that I have all of these spots is kind of like a ticking time bomb, except that I don’t know the amount of time left on the clock or even if the bomb is worth worrying about.  It seems like these could cause problems at any time, or maybe not, and I won’t have any idea when the damage could occur or what damage would be inflicted.  Thankfully I have a lot to keep me busy between now and then.  This weekend we’re celebrating Big Sister’s 8th birthday!  Her family/friends party is tomorrow and she’s having her first sleepover with her friends the night before her actual birthday next week.  We’ll have Passover and Easter to keep us busy the rest of the week.  Hopefully the 15th will be here before I know it.  I will try not to fret too much about what all of the things in this report mean until then, but it’s hard not to worry.

I still thinking looking at the MRI images is pretty cool.  I have not gotten through too many of them.  There are well over a thousand on the CD.  Here are some of the ones that jumped out at me.  I have no idea what they show!  I’ll try to post more once I learn what I am looking at.

Here are a few of the pictures, mainly ones that I thought were just neat or funny looking.  If I find out more about what these are, I’ll let you know!

Profile

Profile

Squiggly Ears

Squiggly Ears

Spine showing organs

Spine showing organs

T2 Axial

T2 Axial

Another view of T2 Axial

Another view of T2 Axial

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March 6, 2009

Seriously, this could still be something else?

Yesterday I finally got to see my new specialist!  She was great!  I am very glad that I found someone who knows more about MS than my general neuro.  She suggested that I’d be happier if I kept Dr. Generalist as my primary since he’s certainly easier to get in touch with for prescriptions, appointments, and things like that, but that I see her a couple times a year.

Then I started chatting with Dr. Specialist.  She asked why I was there.  I thought that was funny.  I told her I was diagnosed with MS back in November.  She asked about my symptoms, which so far only include optic neuritis and fatigue.  We talked about my first instance of optic neuritis after that flu shot in 2001 after Big Sister was born and about how it was in both eyes that year and that it’s only been in my right eye since.  I really cannot remember when my vision gets back to normal each time, but I imagine it takes several months and then I eventually notice the ON is back every October.  We also talked about the rest of my medical history, including the Ehlers-Danlos Syndrome.  She didn’t know much about EDS, but is going to do some research on that and see if there is anything I need to know about having both of these lovely things.

After talking, she took a look at my MRI images from 2003 and the CD-ROM from the MRI in November.  This was the first time I got someone to really explain the images.  She said that there were multiple lesions on the 2003 MRI!  She pointed out to me how the black part in the middle should look all black, but how that wasn’t the case in my images.  She explained what was different on the 2008 scan.  It showed a newer active lesion on the right part of the brain.  She looked for traces of it in the 2003 scan and said there may have been some minor bit, but she couldn’t get a good enough view from the images that were available.

Brain MRI Image showing white matter in the center

Brain MRI Image showing white matter in the center

After talking about the MRI images, Dr. Specialist did her exam.  I always have fun during neurology appointments.  The first thing we did was to go out into the hallway.  I got to walk back and forth, walk toe to heal in a straight line, hop on each foot (that was a new one), walk on my toes, and walk on my heals.  Then it was back into the room for more fun activities.  I got to do the other drunkard tests – touch my nose, then her finger, touch my nose which she moves her finger, touch her finger, etc. as well as the “how many fingers am I holding up” test.  I was able to easily read the bottom line of the eye chart card with my left eye and it wasn’t completely clear with my right, but I got a lot of them!  That was pretty good in my book and is an improvement from November!  She asked me to cover one eye and look at the red stitching on her lab coat (it’s smart of them to use red stitching for their names.)  It was a duller red than it was with my left eye.  It was like someone put a tint over it.

She also checked my resistance.  She had me put my arms out and she pushed to see how well I could resist.  She did the same things for my legs.  She used the neat hammer thing to check reflexes and sensation.  I was able to feel everything and apologized for almost kicking her when she ran the thing up the bottom of my foot.  She also kept flicking the top of my middle fingers, but I have no idea why!  I should have asked about that one.

I passed all of the fun tests with the exception of the red being dull and my optic nerve looking pale, so I guess it wasn’t quite passing with flying colors.  We talked a bit more after that.  I asked if it was unusual to only have optic neuritis and no other symptoms after 7 years with no treatment.  Her response seemed to indicate that it wasn’t completely out of the relm of typical, but it didn’t seem common.  Perhaps I am just fortunate.  But, given that optic neuritis is my only symptom, she wanted to do some blood tests to see what’s going on.  She also wants another brain MRI on a better machine to see if she can get better information on what is going on in my brain.  I’ve never had a spine MRI, so she ordered that, too.  I’ll get those done in a couple of weeks.

Before I left the hospital, I had to go to the outpatient lab.  I scribbled down what they were testing for:

B12

Folate

Complete Metabolic Panel

Thyroid Stimulating Hormone

Blood Count w/ Diff

Anti-Nuclear Antibody

Sed Rate

AntiSSS, AntiSSB

Angiotension Converting Enzyme

Rheumatoid Factor

Lyme (they already tested for this, but she wanted it checked again)

NMO IgG

This took 8 vials of blood!!!  That’s more than I’ve ever had taken at one time.  I’m known to pass out or at least black out while having blood taken, so I warned them ahead of time.  They gladly gave me some water and OJ, which was really nice of them.  Thank goodness the nurse was quick and was good at small-talk.

I thought the NMO IgG one was interesting.  She told me not to Google it, but of course I did anyway.  That one gets sent out to the Mayo Clinic for analysis.  It tests for Neuromyelitis Optical (NMO) which is also called Devic’s Disease. This disease also affects the myelin.  It can lead to a loss of myelin and can also damage nerve fibers and surrounding tissue.  While in the past it was thought to be a severe variation of MS, it is now known to be a separate disease.  In addition to causing optic neuritis, it can also lead to paralysis of arms and legs, cause sensory disturbances, and lead to bladder and bowel control issues.  Again, I don’t have any of the sensory problems and no bowel or bladder problems.  So, I have a feeling it’s not this.  Has anyone else been tested for NMO IgG?

I go to see Dr. Specialist again next month to see what she’s learned based on all of these tests.  I love seeing the brain images, so I can’t wait to see what the ones look like on the better machine.  What I’m not looking forward to seeing is the co-pay bill for all of this!  I bet I wipe out the healthcare FSA by June at this rate.  At least I’m lucky enough to have one of those.

In the meantime, she said to keep on the Copaxone.  She said I can take thighs out of the rotation and do other areas more frequently, but that makes me nervous.  I’m going to call her nurse for more ideas.  She also said I can do the upper part of my tush, as long as it’s not a part I sit on.  That was good to know.

I’m very happy that I found this dr.  My husband and I both really liked her.

December 18, 2008

This is my brain…

Filed under: Uncategorized — by mseds @ 10:16 am
Tags: , , ,

This is my brain (Sagittal view):

Brain-sagittal view

This is my brain with white spots (3-plane loc view – whatever that means):

brain- with spots

This shows the larger white spot (I think) on the right side of my brain (Axial Flair view):

brain- axial view

I still don’t know if I am reading these things correctly, but I find it fascinating and want to learn more. I was trying to find photos of “normal” brains to compare mine against. My husband had an MRI two year ago and I thought it would be neat to compare what’s in our noggins, but his was on film, not CD (not sure why since they were doing CDs back then.) So, I searched around and found a site that explains Brain Anatomy. The pictures aren’t a one-to-one comparison, but it was interesting to see what the different parts of the brain are called.

Even with that, it only helped me understand the MRI report a little better. (Lisa’s comments a little while ago were more useful. Here are excerpts from the ’08 MRI report:

  • Discrete high signal intensity lesion in the right peritrigonal white matter measuring approx 1.7cm
  • Several discrete high signal intensity lesions specifically in the left frontal periventricular white matter, right frontal subcortical white matter, left parietal centrum semiovale and subtle high signal foci in the left frontal and right posterior parietal periventricular white matter.

If anyone can explain this in plain English or point me to a place that does, I’d greatly appreciate it! Next time I am at the neuro’s office I’m tempted to ask him to pull up the images in the CD. It’s kind of like looking at a baby’s ultrasound picture and having a nurse say, “oh, those are the kidneys” and you are staring at it and having no clue what you are looking at. At least then they have the image up and you are right there and they can point things out. Eventually you notice something that looks familiar, like an arm or a foot and it is so cool. Now I can look at other people’s ultrasound pictures and be able to recognize things. I’d like to get to that point with understanding brain MRIs and it doesn’t seem like you should have to go to med school to know what you are looking at in a picture. I want to understand what’s going on inside of my head. The MRI report was obviously written for a doctor, not a patient. They should provide plain-English details for the patient, too. Hopefully the doctor will take the time to show me some of this at the next visit.

Oh, the report does mention that this could be something else, but the Lyme test I had came back negative. So much for getting to blame this all on a tick!

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